ABOUT US
EMBARC is a pan-European network committed to promoting clinical research and education in bronchiectasis, through sharing of protocols, research idea and expertise. Central to this project is the creation of the European Bronchiectasis Registry, a collaboration open to all investigators around Europe caring for patients with bronchiectasis.
Our History
The European Multicentre Bronchiectasis Audit and Research Collaboration network (EMBARC) was established in 2012 to facilitate multidisciplinary collaborative research in bronchiectasis.
Over the past decade, EMBARC has successfully realised its foundational goals:
EMBARC continues to lead the charge in bronchiectasis research, fostering innovation, collaboration, and excellence in clinical practice and scientific discovery.
Why do we need EMBARC?
Bronchiectasis has historically been an under-research and under-resourced “orphan disease”. It is now recognised that bronchiectasis is placing an increasing burden on healthcare systems around the world and there is an urgent need for better treatments, better clinical care and for clinical and translational research in this condition.
EMBARC is the first truly international bronchiectasis network seeking to bring together investigators from around the world. Central to the project is the creation of a multicentre registry of patients with bronchiectasis. This study will enable a group of experienced researchers across Europe to answer fundamental questions in the epidemiology, aetiology, microbiology, pathophysiology, clinical management and prognosis of bronchiectasis.
Introduction
Bronchiectasis is an orphan disease, with few evidence based treatments and a lack of data regarding epidemiology, co-morbidities, pathophysiology, severity and prognosis. There have been few longitudinal or cross-sectional studies in bronchiectasis. To give truly meaningful and generalizable results, a longitudinal observational study of bronchiectasis would require to enrol several thousand patients, more than any one centre can enrol. EMBARC will create an open, pan-European registry of patients with bronchiectasis.
A collaborative, pan-European database would have several important capabilities, including but not limited to:
Objectives of the study
Study Design
Participation is open to anyone caring for patients with bronchiectasis. The study is now open with a short term target to enrol over 10,000 patients over the course of 5 years. Baseline data will be recorded using a baseline data form incorporating all relevant bronchiectasis variables. Study participants will then be asked to enter follow up data for patients on an annual basis to give longitudinal data on changes in medication, exacerbation frequency, hospital admissions and survival data.
The data set will be sufficiently simple that any specialised bronchiectasis clinic will be able to provide the data. Nevertheless, the data are sufficiently robust that they will provide a comprehensive overview of all aspects of bronchiectasis care in Europe. The network is intended to serve as a platform to engage researchers and facilitate collaborations around Europe.
Join the EMBARC network now to view the case report form and find further information about taking part in the network activities.